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AVM Survivors Network

Radiation and migraines

It’s been almost 18months since my radiosurgery for my AVM. For the last 18 months I have had almost daily migraines sometimes multiple times a day and sometimes very painful. After several failed attempts at medications to help my neurologist finally came to the conclusion that my migraines are more than likely being increased by the radiation. I’m wondering if anyone could tell me if they experienced this how long did it take for the radiation to get out of your system [for example once your AVM was closed off or was there residual radiation after if so how long after]? I can’t imagine living my life (and I know I sound selfish when others are dealing with worse) this way. I want to have a family but I dont see how that’s possible when I cant go to the movies or grocery shopping.

@Ctheworld87
I haven’t had radiation but I do have daily head pain and I get migraines
See about getting Botox shots
The first round for some reason doesn’t always help but the second round does
You get them every 12 weeks.
This has been the biggest help and maxalt
Angela

Thanks Angela I’m actually awaiting approval for botox and keeping my fingers crossed it will work.

1 Like

@Ctheworld87
Keep us posted- they have their protocol for where they are supposed to do the shots but my pain neuro who is head of her dept puts the shot where my actual pain is…and it does make a big difference which to me is logical.
Hopefully your dr will do this straight away.
I also let them do my jaw for TMJ which can also lead to migraines and my traps but never my neck for two. Reasons 1) I already have a weak neck. 2) other people have told me they have issues with it since it makes their neck weak.

It can be different with each dr doing performing it as well. So now I only let 2 drs in the pain clinic do my shots.

Angela

Hi,
I had an AVM in the cerebellum. My AVM leaked burst whatever people call it. I had GK 4 months later. One of those months were in the hospital after the leak. I have had head pain since then. The reason for my pain is when they did my GK they did not support the neck while it was hooked to the GK machine. That caused my atlas to move which in turn has your head off line. Also while attaching the head to my head on the right side the trigeminal nerve was hit so I get very sharp pains in my right eye. My issues have been going on since September 30,2013. It took a long time to figure out what was wrong. I have learned to deal and also take Gabapentin 300mg 3 times a day. I have started taking CBD oil in a capsule 15mg due to my size once a day. I have found the 2 things let me function. I am never free of head pain but it’s better than the alternative:)
With the noise I have found using what they call orchestra ear plugs reduce what you take in and let you go to the movies, football and basketball games. The only thing I have not done is a concert. I do limit how long I can take things due to fatigue. There is absolutely a “ new” normal you will have to find ways to adjust to.
They scanned my head making sure the I was not suffering from radiation necrosis. You might want to make sure that is not what is occurring with you. Please feel free to PM if you have any questions. I have tried everything that has come up and I’m always looking for new procedures but while doing that continue to live the life you have. Here’s to things getting a little better each day. I wish you all the best!
Niyani